Do you have any idea what it feels like to finally realize you will never share another Christmas with your only child?

I hope you never do.

The most common thing I hear these days is: "You are so strong."  But, I AM NOT!!!  I am not strong - I am barely surviving.  If people only knew just how weak I am, I think they would be shocked.

I am strong when they are here - I am a caretaker - it has always been my job to make everyone else comfortable.  I am still trying to do that. 

I tell people I am okay - let's talk about them.  In other words, I continue to sweep my pain under the rug, letting others take up residence in my brain with their problems - their issues.  That is something they can talk about for days.  Heck, who I am I kidding?  They can talk about anything, as long as they don't have to talk about my dead daughter.

It's not hard for me to say: "I love you."  I have always said those words - especially to my daughter and to my husband.  But, I also try to say it to my students who need someone to  love them.  However, since Tash died, I try to tell everyone that I love - I want to tell them every time I talk to them - I NEED them to know - just in case...

It is a little harder to say: "I am sorry."  But, I can do it.  In fact, I can do it, even when I am not really sorry.  When people ask if I have children, and I tell them the truth, they react with horror, and I apologize TO THEM.  But, why am I sorry?  Because they are uncomfortable?  Because I brought down their day a little?  WHY AREN'T THEY SORRY???  After I say my daughter died, they cannot make eye contact with me any more - they cannot wait to get away - so with promises of a follow-up phone call and a lunch date, they flee as fast as their feet will carry them.  They make sure to hit the ground running, hoping that what I have is not contagious and that my "bad luck" has not rubbed off on them.  But, I see it - as soon as the words escape my mouth, I see their eyes begin to dart back-and-forth, looking for the escape hatch.  But, I let them go - sad, knowing I am more alone, but, knowing the only way to make them see is to bring them sadness or lay on the guilt.  So, I let them go.

But, the impossible words for me to speak are: "Help me" or "I need help."  I just can't do it - I don't care that people would see my weaknesses - maybe, they wouldn't say how strong I was - but, I don't care about that.  I just don't know how to ask for what I need.  I love all those people who tell me to call if I need anything - if they only knew the anxiety that I feel if I even THINK about picking up the phone to call anyone.  I cannot ask for help - I cannot answer my door - I cannot even make a choice between paper and plastic.  I don't know why it's so hard to ask for help - but, it is so hard to make it through each day - and, I just don't know what to do.  I guess, on one hand, I am afraid if I seem to needy, it will scare people away - but, I am also afraid they will stay!  Make sense?  No, I know it doesn't - but, not much in my world - or in my head - makes sense any more. I wish I knew how to make sense of any of this.  But, I do know now what to do when any of my friends and/or family go through trauma - I will not wait for them to ask for help - I will help - I will hold their hand - I will have tissue ready and listen to them cry - I will mention their loved one's name often - I will sit with them and listen to the silence.  This is really all we need from our friends and family as we grieve - I don't know why, but, it still seems like it is too much to ask for.

I am not strong - I am a mess - I don't mind that people think I am strong - but, I sometimes wish that they knew the truth - or at least, really cared enough to find out.

Tash LOVED Halloween!  She also loved working at Howl-O-Scream.  I was never sure why - but, as she got older, I have a feeling it was because she could hide.  Once she had on her costume and make-up, no one could see the side effects of all she had been through - the scars that she had on every part of her body except for one arm and one leg.  She was no longer the sick girl - she was bad-ass - the girl w/attitude.  SHE WAS SCARY!  And, nothing could scare her!

Who would have ever thought that this girl had to be hooked up to a machine six days a week to live?  She loved that time of the year more than any other.  After she died, all these people that she had worked with for the last five years showed up. They loved her - and, I understood why she loved them and her job.  These people accepted her and they loved her.  I am happy she had that for those years - and, I wish I had been more involved in that part of her life. 

But, I dread this time of year, now, as much as she loved it.  For this is the time of year she loved most.  She always found that lost energy - recovered her zest - and her love for life.  Tash always had a smile on her face, but, it was never bigger or brighter than it was the time that she worked at Howl-O-Scream every year.  That wasn't always true - but, in the last few years, with her health being her main focus, it became true - her only escape from the disease and its limitations. 

It's amazing - and terrible - how one death can create so many losses.  Even as you try to tally them up, there is no way to do it because something always pops up unexpectedly and creates a new offshoot to the already long and horrifying list.  There are all the lost days - the weddings, the birthdays, the holidays - the things you expect - but, then, there comes along the days that just made her happy - the thrill that you could hear in her voice when she made it through auditions - the laugh of when she tried on her "costume" for the season - and the look on her face in the pictures that she sent (even though, she was not supposed to) when they did her make-up for the first time. 

I really just don't know - I really don't - there just seems to be so much lost - and I am finding more things every day.  I try to think of all that she gained through her death - peace, no pain, eternity - but, I just don't know that it is enough to get me through the days that continue to come - maybe later...but, not right now...

Birthdays....Tash loved her birthday.  She could never just celebrate one day - it had to be about a week.  I had never had the heart to tell her "no."  I sometimes wonder if things would be different now if I had set more limits then.  But, how could I?  For all she went through, she deserved that and more.

My idea here was to upload pictures from different years - but, I cannot bring myself to go through pictures yet.  It just hurts too bad.  Tash loved to go through old pictures and could sit for hours - it wouldn't take long before I would get caught up in it and be on the floor "wasting time" going through stacks of pictures with her.  I have so many regrets , but, that "waste of time" is never one of them. 

But, I do have guilt....so much guilt...

Everyone says I was a great mom - but, what do they REALLY know???

Guilt is a heavy bitch - a monkey always on my back - and, I am not really sure that will ever change.

Does it matter if it's self-inflicted or if it is real?  Does that change ho you feel?  I have heard it said that one's perception is his truth.  Never has this been more true than now - as I fight the heaviest, most relentless beast there is - GUILT.  No one else has to judge us after the death of our child - we will do it all - I could have done more - I should have done more - why didn't I see?  This list could go on for pages - it is a roller coaster ride that dumps us bereaved parents into the depths of despair - farther and farther until not even a microscopic speck of light is left.  It is guilt, more than any other feeling, that squeezes our hearts at night and places that weight on our chest, so heavy and so dense that it is difficult to even take half a breath.

There were so many things I could have done differently - and, no matter what anyone says, I know it is true - and, it is a FACT that she would be here if I had done things differently.  My counselor says that is a normal feeling and most grieving people go through it - but, for me, it is true.  I decided to make 2011 a different kind of year - to do more for me - to force Tash to become more independent - she was 27 - time to grow up, I thought.  I put some space between - space that had never been there.  I wanted her to be independent - I mean, I wanted her to need me and want me - but, to the exclusion of being able to do for herself.  I didn't want to enable her - we had always been so enmeshed - it was time to have a healthier relationship.  But, it was the wrong time.

(Tasha floating in the pool in 2010 - still had her perma-cath - so she couldn't get all the way in the water - but, she always had her chair.  Tash loved the pool and it really sucked to have that cath for almost 8 years and not be able to get into the water.)

All the pain - for what?

I continue to hear that there is a reason for everything - but, I still do not understand what all Tash's pain and suffering was for - I still do not understand what my suffering is for.  Tash suffered so much - and she deserved a break - is death her break?  It is certainly not mine - I miss her so much - and I just think continually of all the things I won't get to see her do.

All parents want to give their children a better life than they had growing up.  That was never truer than in my case.  But, the cards were stacked against me from the beginning.  That stupid kidney disease was present from the beginning - but, we never thought it would affect her.  After all, most people didn't even experience symptoms until their 40s.  But, as with everything else, we were not to experience what as typical.  Puberty sped up Tash's kidney failure - but, we never let it slow us down.  Should I have let it?  Did I push too hard?

December 10, 1999 - Transplant day.  We were never worried - never scared.  Should we have been?  Probably.  But, we just went in there like it was matter-of-fact and we had decided to kick its ass.  And, we did.  We had avoided dialysis and we sailed through the transplant.  There were a few hiccups after that - but, they were few and far between.  Six months to the day after the transplant, Tasha participated in the Transplant Games - kicking ass in track and winning 2 medals.  She even stepped outside her comfort zone, participating in the swimming competitions.  There were terrible side effects from the meds - we all hated them - Tash most of all.  But, she never let them stop her.  She kept her tears private from the world - I held as she cried - and fought my own tears in the process.  It was NOT fair.  It is awful the way an illness can come in and destroy a person, while taking away their pride and dignity.  But, we pressed on, and by the fall, Tash was back on the soccer field, active in church, and busy behind the scenes in the drama department.  She was amazing!  (I am not sure I told her that enough!)

She finished high school - got accepted into one of her top college picks - Florida State University.  At 17, my baby went away to college.  We were all so happy - the side effects were fading - we hadn't had any scares in a while - she was happy - life was good.

But, only for a while - we will never know why - but, Tash's kidney - MY KIDNEY - started to fail.  By the time we could get all the lab work together and the doctors to communicate, it was too late - the kidney was lost.  Now, we would really learn what hell was.  There would be no more sailing through - there would be no easy days - and kicking ass - this kidney disease was now going to turn our lives upside down and kick our ass.

This was to take my beautiful, confident girl who had already endured so much, and ravage her body, wreck her happiness, and leave us in fear for the next nine-and-a-half years of her life.  I fought for her - God knows I fought for her - I cried myself to sleep at night - but, during the day, I fought.  I became as educated about the kidney, the disease, dialysis, the meds, etc. as any nephrologist.  While Tash was hooked up to that dreaded machine that we had fought so hard to avoid the first time around, I read, I researched, I questioned the doctors and the nurses.  When she was awake, I worked my ass off to make her life as normal as possible - we played games, we talked on the long car rides back and forth to the hospital, we shopped - all the while, I was watching my baby girl disappear into the medical procedures and practices that would eventually weaken her body to the point where the will to fight became non-existent.

The rest of the story is long - but, it does deserve to be told - and it will be - eventually.  The story ends on January 7, 2012.  I still feel as if my own life ended on that day as well.  I fight - I try - but, I know the truth about how much that truly helps - in the end, it did not help Tash at all.  She suffered for nothing - and, I pushed her - "Keep fighting," I said - BUT, FOR WHAT???  It makes no sense to me now - I try to understand - but, I don't and I don't know if I ever will.

It's just another Saturday night, crossing off another week she has been gone.  I want to continue to tell her story - but, that is enough for the night.  For now, I want to look at her pictures and remember...

And, yes, I know (thanks for the emails reminding me) that I haven't talked about her birthday - it just seems that every time I start, I cannot finish - I am not ready - but, soon...

So, I am struggling with what to share the last couple of days...her birthday changed everything for me - some good - mostly bad.  But, I am working on it - been blogging a lot - but, "private blogging."

I am still here...that could be the good news...or the bad news...depending on how you look at it.   But, I am only going to go with the good for now...the bad will still be there tomorrow...

The good is that I took another step out of my comfort zone - I signed up for the Susan G. Komen 3-day walk - yep, that is 60 miles!  But, I am doing it - to honor Tash - to do something else she never got to do - something we never got to do together.  I am also doing it to honr my niece, DeDe - who is kicking cancer's ass.  I have known a lot of hard asses - but, these ladies are not hard - they are tough!  And, I am proud to be able to do this in their honor.

I walked my first 10 miles yesterday - the beginning of my practice walks.  I am pretty sure I can do it - not easily - but doable.

If you want to check in, see my progress, or even make a donation toward my $2,300 goal, please visit my personal page:

http://www.the3day.org/site/TR/2012/TampaBayEvent2012?px=6713855&pg=personal&fr_id=1770

It is an in-progress page - so check back as I get it set up!

Tomorrow, I think I am ready to talk about Tasha's birthday...a little...